Clinicians from all specialties can use this guide to enhance services for adults who could benefit from remote patient monitoring (RPM) throughout their end of life and palliative care (EoLPC) journey.
Clinicians can use this information to help manage an adult patient who has a life-limiting illness or is approaching end of life, and would benefit from RPM, in partnership with family and carers. This includes patients in community settings, those who have limited access to primary care services and specialist support, and those who require increased monitoring.1, 2
The end of life and palliative care journey
For the purposes of this guide, we use the term ‘EoLPC journey’.
To clarify this terminology and to highlight potential opportunities for RPM across the EoLPC journey, we have adopted the following five palliative care phases:3, 4
- Phase 1: Stable
- Phase 2: Unstable
- Phase 3: Deteriorating
- Phase 4: Terminal
- Phase 5: Bereavement
Identify each phase through a holistic clinical assessment that considers the patient’s current condition, individual needs and, where appropriate, the needs of the family and carer. The phases reflect the patient's current clinical status and can change.
Phases are not necessarily sequential. Patients may move back and forth between some of the phases depending on their evolving needs.
Movement between palliative care phases can be contextualised through well-established patterns of decline, as seen in 3 common progressive illness trajectories for patients:
- Cancer (short decline)
- Organ failure (intermediate with acute episodes)
- Frail elderly or dementia trajectory (gradual dwindling)5
Key principles for RPM in EoLPC
Select a principle to explore its importance to RPM in EoLPC.
Patient identification and referral
When determining a patient's eligibility for RPM, take into account patient suitability and alignment with the service model.
Based on clinical judgement and the following criteria, patients may be eligible for RPM when they:
- meet the general eligibility criteria, acknowledging that patients in certain palliative care phases may not be ‘medically stable’ but still appropriate for RPM
- belong to a priority population
- belong to acute, sub-acute or post-acute and chronic RPM EoLPC care pathways
- would benefit from RPM to meet identified healthcare goals specific to different palliative care phases
- express a preference for RPM. Use in palliative care phases must be informed by patient, family and carer preferences and goals of care.
In addition to the general RPM suitability considerations, use the following key factors to assess RPM alignment with, and responsiveness to, the clinical needs and wishes of a patient along their EoLPC journey, in partnership with their family and/or carer.
| Key factors | Considerations |
|---|---|
| Type of monitoring | Can the service offer the type of monitoring (intermittent or continuous) that is needed to manage the patient's symptoms and/or condition? Does the patient have internet connectivity? |
| RPM platform capabilities | Can the RPM platform collect and present data to track the patient’s symptoms, treatments and lifestyle factors required to optimally manage the patient at this phase in their EoLPC journey? |
| Clinical review and trajectory | Has the patient been recently reviewed by a medical officer? What is the expected clinical trajectory for this patient? |
| Clinical optimisation and monitoring | Are there any unmanaged, reversible causes of deterioration?
If observations are being undertaken:
Has oxygen therapy been weaned or optimised for discharge (if applicable)? Does the patient have access or isolation issues?
Does RPM support the patient's quality of life at home and enhance access to care? |
| Function, capacity and family involvement | What is the expected or predicted baseline functioning for this patient?
Are family members or carers required to participate in care? Have the family and carers been involved in discussions around the use of RPM?
|
| Home safety | Is the patient safe to be at home with current community supports (or without support)? Are the patient’s condition or needs a danger to family members or carers? |
Support and escalation | Do the patient, family and carers know how to request support? Do they have escalation plans and the capacity to follow them?
Is a GP actively involved in the care of the patient? |
| Clinical action plans and advance care planning documents | Has the referral been reviewed and assessed to determine the patient's current clinical action plan, the goals of care in end of life discussion template or any other advance care planning documents? How do these align with RPM? Has there been collaboration with the patient, family and carer prior to onboarding to determine their willingness, and to guide personalised device selection, monitoring approach and RPM duration? Did this take into account the service model’s capabilities, RPM platform functionality, internet connectivity and goals of care? Have the agreed RPM intervention limits, established by the patient, family, carers and clinical teams in relation to the patient's goals of care, been documented, respected and adjusted as necessary? |
Onboarding and ongoing assessment
Monitor patients across the EoLPC journey through an RPM platform, including patients with acute, sub-acute, post-acute or chronic presentations.
Patients may start on one pathway and transition to another, as the relevance of RPM relating to the below care pathways may change based on clinical needs.
Prevent unexpected deterioration and avoidable hospitalisation:
- Prevent unexpected deterioration and avoidable hospitalisation for people at risk or with multiple recent unplanned presentations
- Detect, prevent and manage early, unexpected changes in a patient’s condition, or deterioration of family and carers
- Obtain important subjective and objective data during a stable palliative care phase to benchmark against suspected deterioration
- Support hospital substitution, aligned with a person’s goals of care
- Support hospital discharge or early discharge from hospital
- Manage acute infections, such as a respiratory infection not yet requiring hospitalisation
- Respond to acute exacerbation of symptoms or chronic disease, such as increased breathlessness, pain or heart rate, before hospitalisation is required
- Monitor and manage chronic conditions with slow deterioration, transitioning between palliative care phases
Enhancing care:
- Provide symptom-based care, focusing on comfort and quality of life and based on a patient’s goals and preferences
- Support new or altered medication use, and response to treatment, e.g. home oxygen, opioids
- Obtain a baseline for new admissions to EoLPC services or any service providing care for a patient with a life-limiting diagnosis or nearing the end of life
- Conduct assessment to identify whether to refer to other support services
Improve access:
- Substitute clinic visit for issues of access, e.g. distance, cost, pain, immunocompromise, mobility, fatigue, transport1, 8, 9
- Allow patients to travel out of the area for a short time
- Support isolated patients who have little to no support network and have issues attending care, including patients living alone, or within group homes, transient housing and boarding houses
Provide patient-centred care:
- Align care with the patient’s goals of care
- Support the function and needs of the patients' families and carers
- Provide data to support more informed advance care planning and decision-making
- Support people who choose to die in their home
- Increase health literacy, self-management and empowerment to participate in care planning
- Provide health coaching to reduce modifiable risk factors
- Obtain biometric data to help identify deterioration where subjective data is potentially affected by miscommunication, stigma, social stoicism, elder abuse, minimisation or embarrassment
- Support targeted communication with patients, enabling contact to be more informed, productive and purposeful
- Align care with cultural or religious needs or beliefs, and considering culturally and linguistically diverse populations
Use RPM tools in EoLPC to screen, assess and monitor activity, as well as physical and psychological symptoms. RPM data supports timely decision-making, enhances care coordination and individualised management plans as part of a comprehensive clinical evaluation.
A range of data collection tools are outlined in examples of RPM in EoLPC.
Patient reported measures
NSW Health has endorsed patient reported outcome measures (PROMs) that are suitable for patients and carers during EoLPC. These PROMs can be accessed by NSW Health staff through the Health Outcomes and Patient Experience (HOPE) platform. They include:
Patient tool: Integrated Palliative Care Outcome Scale (IPOS)
IPOS is a brief yet comprehensive measure, capturing a patient’s most important concerns, in relation to symptoms, as well as information needs, practical concerns, anxiety or low mood, family anxieties and overall feeling of being at peace. Recommended IPOS collection points are:
- on admission or commencement of care; and
- at change in care plan or patient and family/ carer needs (PC phase change); and
- as clinically indicated.
Carer tool: Family Appraisal of Caregiving Questionnaire for Palliative Care (FACQ-PC)
The FACQ-PC measures the positive and negative components of caregiving, for family caregivers of people receiving palliative care at home. The FACQ-PC provides a measure of the family's appraisal of caregiving which can be used in clinical assessment, and has potential utility for evaluating the effectiveness of palliative care interventions. Recommended FACQ-PC collection points are:
- on admission or commencement of care; and
- at change in care plan or patient and family/ carer needs (PC phase change); and
- at discharge; and
- as clinically indicated.
More about patient-reported measures
Patient assessment tools
Apply a range of EoLPC patient assessment tools, including surveys, depending on service preferences, capabilities and the patient’s presentation and needs.
Assessment information identifies early signs of patient and carer deterioration and patient symptom burden, which helps shape management, treatment and future care planning.
Provide upfront and ongoing education for clinicians, patients, families and carers to support the successful and effective implementation of patient assessment tools.
Palliative Care Outcomes Collaboration (PCOC) is a national palliative care program funded by the Australian Government Department of Health, Disability and Ageing, which publishes commonly used EoLPC RPM patient assessment tools. PCOC4 uses 6 clinical assessment tools to help identify and respond to common EoLPC symptoms, which can be used independently or together:
- Delirium assessment: includes clinician-rated presence of delirium, and patient-rated (or proxy) assessment of delirium severity over a 24-hour period.
- Edmonton Symptom Assessment System (ESAS-CS): a patient-rated assessment for the severity of symptoms over a 24-hour period regarding pain, tiredness, drowsiness, nausea, appetite, shortness of breath, constipation, sleep, depression, anxiety, wellbeing and other symptoms. Proxy-rating can be used if necessary.
- Palliative Care Problem Severity Scale (PCPSS): a clinician-rated assessment where four palliative care domains are assessed: pain, psychological/spiritual, other symptoms and family/carer.
- Australia-modified Karnofsky Performance Status (AKPS) Scale: a clinician-rated assessment of performance relating to work, activity and self-care over a 24-hour period.
- Resource Utilisation Group - Activities of Daily Living (RUG-ADL): a clinician-rated assessment of dependency over a 24-hour period, including bed mobility, toileting, transfer and eating.
- Palliative Care Phases: a classification of five clinically meaningful periods in a patient’s care trajectory.
More about the PCOC4 assessment tools and forms
Patient activity logs
Activity logs, whether digital and real-time or paper-based, help identify trends and provide valuable data on aspects of care, including medication administration, fluid balance, nutrition, dysphagia, patient movement, wound management, pressure care, sleep and general activity. Activity logs can be patient-reported or log observed outcomes, including patient reactions to medication administration, feeding or pressure care.
Various activity logs are available through your LHD, specialty network (SN) and/or the electronic medical record.
Carer surveys
Include family and carer wellbeing as part of monitoring, to detect signs of fatigue, stress or deterioration, both pre- and post-death. Use tools such as carer experience scales and carer support needs assessments to identify, understand and address burden before families and carers experience overwhelm and decline. Surveys and feedback mechanisms for carers can identify unmet needs, whether related to practical care, emotional stress or informational support. Include the Burden Scale for Family Caregivers (BSFC), which is an instrument used to assess the caregiver’s total subjective burden, and is available in 20 languages.10, 11
Many patients with a life-limiting diagnosis have an expected prognosis of a year or longer and are undergoing ‘active management’, which includes disease-modifying treatment and management of acute clinical symptoms.18
Vital sign monitoring in this cohort can increase a patient’s quality of life, permit timely treatment, prevent unnecessary hospital admissions, reduce morbidity burden and inform clinical treatment plans.12-14
Considerations for vital sign monitoring in end of life
Only implement vital sign monitoring during end of life care when it aligns with the patient's goals, as determined through transparent, shared decision-making with patients, families and carers. If you initiate monitoring, reassess regularly, considering the broader goals and holistic needs of the patient.12, 15, 16
Evidence supporting both the use and non-use of vital sign monitoring in end of life care
- Vital sign monitoring may be inappropriate and unnecessary for some end of life patients, considering patient comfort, nearness of death as a natural process, and clinical irrelevance.12 Carefully consider the ethics of monitoring vital signs when the goal of care is comfort rather than disease treatment, especially if interventions would not improve quality of life and could prolong suffering, cause discomfort or increase anxiety.15, 16
- Some patients and carers find biometric monitoring helpful for individualised and timely symptom management and to support assessment of the nearness of death, especially for patients with limited communication capacity or who live remotely.12, 17, 18
Adjust RPM tasks, frequency and schedule based on the patient’s individual requirements, goals of care and the clinical indication, as the RPM episode of care progresses. Avoid RPM which is invasive, painful, unwanted or produces minimal changes to care.
Some EoLPC RPM examples may require clinician support via other suitable virtual care modalities. Ensure that clinicians are appropriately trained, operate within their scope of practice and use these tools in alignment with available resources and patient needs. Use proactive clinical approaches and give special consideration to isolated patients who may not have support or advocacy mechanisms, such as family or carers.19
Care task | Type | Frequency | Schedule |
|---|---|---|---|
Vital sign | |||
Blood pressure* Heart rate* Oxygen saturation* Temperature Weight Blood glucose level | Biometric assessment, screening and/or monitoring | Optional or as needed (PRN) | An example of 4 x per day monitoring: 6:00–10:00 10:00–14:00 14:00–18:00 18:00–22:00 |
Patient assessment tool or activity log | |||
PCOC4 Assessment Tools, including Delirium, ESAS-CS, PCPSS, AKPS, RUG-ADL, and Palliative Care Phases Comfort observation and symptom assessment chart – adult IPOS and IPOS-Renal Charlson Comorbidity Index Bowel chart Fluid balance chart Oral care chart Medication list, use and response log Skin integrity screening Pressure care and wound management chart Actigraphy device log (including sleep patterns, movement, falls or activity levels) | Assessment, screening or monitoring | Daily, weekly or PRN Can be implemented in response to PCOC4 results Specifically, PCOC recommends assessments at admission, daily and at each contact, at phase change, and discharge | Suggested survey receipt between 7:00–12:00, or as appropriate for the patient and within the timeframe in which the service can respond |
Nutrition and swallowing assessment tool and activity log | |||
Food log Eating Assessment Tool (EAT-10) Malnutrition screening tool Pill dysphagia screening tool (PILL-5)
| Assessment, screening or monitoring | Optional or as PRN Can be implemented in response to PCOC4 results | - |
Psychological assessment tool | |||
Death and Dying Distress Scale (DADDS) Psycho-Existential Symptom Assessment Scale PHQ-4 Screening Tool | Assessment, screening or monitoring | Optional or PRN Can be implemented in response to PCOC4 results | - |
Cognition assessment tool | |||
Aged Care Network cognitive screening tools Kimberley Indigenous Cognitive Assessment (KICA) | Assessment, screening or monitoring | Optional or PRN Can be implemented in response to PCOC4 results | As clinically appropriate and undertaken by a medical professional. Carer can screen where appropriate |
Caregiver assessment tool | |||
Burden Scale for Family Caregivers (BSFC) Carer Support Needs Assessment Tool (CSNAT) Needs Assessment Tool for Carers of People with a Chronic Condition (NAT-CC) or Cancer (NAT-C) Caregiver Self-Assessment Questionnaire Modified Caregiver Strain Index (CSI) Family Appraisal of Caregiving Questionnaire | Assessment, screening or monitoring | Optional or PRN | In addition to PRN, consider during onboarding to get a baseline, where appropriate |
Non-urgent call back request survey | Check-in survey | Unscheduled or PRN | - |
Technology
RPM device selection
- Patients should be able to use their own monitoring devices. However, these devices are unlikely to be integrated or have bluetooth capacity required by the RPM platform in use. If patients are more comfortable with and prefer to bring your own device (BYOD), they will need to manually enter their measurements into the supplied tablet or smartphone app.
- Discuss with the patient, family member or carer their preferred RPM option (BYOD or supplied devices), both for the period when the care team will be monitoring results, and for ongoing self-management.
- Educate patients, families and carers to use their own equipment to support their capacity to self-manage more effectively after discharge from the RPM service. Additionally, providing education for technology use can aid accuracy in data reporting and minimise reported errors that may result in increasing clinician workload.
- If the service is providing long-term RPM, it may not be able to support supplying monitoring kits. However, if it is only RPM to support an acute short episode of care, then supplied kits may be appropriate.
Clinicians should customise device kits to suit their patient's individual care needs and preferences, adding or removing items, as required. The below example is a kit suitable for use with intermittent monitoring, aligned with the sample care pathways above.
| End of life and palliative care remote patient monitoring sample kit | |
|---|---|
| Tablet |
|
| Biometric devices |
|
| Accessories |
|
Monitoring and review
Consider this guidance for monitoring and review during RPM episodes. Use clinical judgment for specific diseases and symptoms.
Use the following guidance to provide patient, family and carer education and troubleshooting when reporting observations via wearables or surveys. This list is not exhaustive.
| Observation | Considerations |
|---|---|
| Surveys |
|
| Pain |
|
| Pulse oximetry (SpO2) |
|
| Blood pressure |
|
| Respiratory rate |
|
| Heart rate |
|
| Blood glucose monitoring (BGL) |
|
| Weight |
|
RPM helps identify early signs that a patient, their family or carer might be deteriorating. Symptoms of clinical deterioration throughout the EoLPC journey can be multiple, combined and varied, and predominantly relate to the primary diagnosis or the presence of co-morbidities.25 For example, symptoms can differ in malignancy vs non-malignancy, or breathlessness in chronic obstructive pulmonary disease vs heart failure.25
Services must ensure they can respond appropriately to the data they are collecting and have clear plans for what to do when someone’s health declines, including what happens after hours. These processes may vary depending on the service model and whether RPM is managed by a centralised team or by local teams responsible for their own patients. See: RPM escalation information and Recognition and management of patients who are deteriorating (PD2025_014).
Discuss and document a patient’s wishes for their care ahead of time. Where resuscitation could be undertaken by ambulance, emergency or inpatient services, or a patient’s capacity could be lost, clinicians can support patients to consider treatment options and document their choices. This could include completing an advance care planning document and naming a ‘person responsible’.
Noticing early signs of deterioration is key for:
- acting quickly to manage symptoms and give the right treatment
- reducing physical and psychological distress
- avoiding unnecessary trips to hospital26, 27
- supporting patients who want to die at home
- identifying and managing atypical symptoms near the end of life
- review of medications, care plans, and/or goals of care with the patient, families and carer, and the multidisciplinary team using shared decision-making
- stopping treatments or activities that are no longer appropriate or beneficial26
- making sure patients are comfortable and treated with dignity
- recognising when family or carers need extra help before a hospital visit is needed.1, 9
Health coaching and care coordination
The following considerations will assist RPM clinicians caring for patients.
Health coaching supports individuals in behaviour change and self-management. Care coordination ensures continuity and integration of care across multiple services, providers and settings.
Considerations specific to EoLPC include:
- Encourage patients to discuss and document their wishes and preferences in advance care planning documents for patient-centred RPM care delivery and coordination. Use the NSW Government's planning for end of life guide checklist of the various tasks and documents involved in planning for end of life.
- Maintain timely communication with GPs to support safe and coordinated decision-making, effective symptom management and smooth escalation of care throughout the EoLPC journey.
- Patients, families and carers who have regular interactions with RPM services, can be assigned a primary care coordinator, depending on the available workforce. Care coordinators are especially relevant in EoLPC to coordinate the multiple different teams and services. Care coordinators enhance patient satisfaction, ensure continuity of care and minimise the stress for patients, families and carers, of disjointed care, i.e. having to retell traumatic information and experiences.8, 28 This is especially valuable for isolated patients who may not have any support or advocates.
- Care coordinators and treating teams can work closely with Aboriginal Health Workers and Practitioners, including Aboriginal Palliative Care Health Workers, who play an essential coordination role supporting culturally appropriate care and shared decision-making with patients and families, and bridging cultural needs across different clinical services.
Refer to health coaching considerations and care coordination for relevant techniques and considerations.
Resources
For carers
Information for carers: Palliative care and end of life care
Information and useful links for carers of someone at the end of their life or receiving palliative care.
Source: Carers Australia
Carer Gateway
A program providing free emotional and practical services and support for carers.
Source: Australian Government
CarerHelp
A range of tools, resources, free online sessions and information to support carers. All the resources have been checked for quality and usefulness.
Counselling and helpline services
Healthdirect Helpline
Support for palliative care patients, families and carers is accessible through the Healthdirect helpline, which is available 24 hours a day, 7 days a week.
Griefline
Free and confidential counselling and support to people experiencing grief and loss across Australia, inclusive of remote, regional, rural and metropolitan regions.
Source: Australian Government Department of Health and Ageing
Lifeline
A 24-hour telephone crisis support and suicide prevention service.
Future planning
Advance Care Planning Australia
Information about planning for future health care, including making advance care directives and appointing substitute decision makers.
Source: Australian Government
Australian Death Notification Service
A free government initiative to help people get in touch with multiple organisations using a single online notification.
Source: NSW Government
Planning for end of life
A checklist of the various tasks and documents involved in planning for end of life, including where you can get professional help.
Source: NSW Government
Home help
My Aged Care
The starting point for accessing Australian Government-funded aged care services. Provides information and support to understand, access and navigate the aged care system.
Source: Australian Government Department of Health and Ageing
Financial assistance
NDIS
Offers funding and support for people under 65 with a permanent and significant disability.
Palliative care
Palliative Care Australia
The national peak body for palliative care. Provides information about palliative care developed for patients and carers.
Seeking support for palliative care
A range of palliative care services, with availability depending on where consumers live. Some are free, others may have a cost.
Source: Cancer Council
We publish a range of resources to support clinicians, patients, families and carers, including:
- palliative virtual care tools
- a carer’s toolkit for end of life care at home
- End of Life and Palliative Care Framework
- the Blueprint for Improvement
- Clinical Principles for End of Life and Palliative Care.
The Aboriginal Health and Wellbeing Network’s shared decision-making model, Finding Your Way, offers a culturally safe, two-way approach to care planning developed with mob, for mob.
The Clinical Excellence Commission publishes a range of resources for clinicians, including the:
- AMBER Care Bundle: a systematic approach for the multidisciplinary team to follow when clinicians are uncertain whether a patient may recover.
- Last Days of Life Toolkit, including the Prepared Model: offer practical and compassionate guidance for clinicians supporting patients in their final days. Covers early recognition of dying, optimal symptom control, culturally sensitive care and meaningful conversations with patients and families.
Advance care planning
Professional Resource Hub
Provides comprehensive support about advance care planning for health professionals, offering evidence-based information, practical resources and education.
Source: Advance Care Planning Australia
Palliative care
Health Professionals and Palliative Care
Palliative care evidence and tools for health professionals and information about death and dying for the whole community.
Source: CareSearch
Assessing and Managing Symptoms
Learn palliative care knowledge and skills for undergraduates. An Australian Government-funded learning resource focusing on life-limiting conditions and their associated differential patterns of illness referred to as illness trajectories.
Source: Palliative Care Curriculum for Undergraduates (PCC4U)
Centre for Palliative Care
Education, training and research to improve palliative care practice across Australia. Based at St Vincent’s Hospital Melbourne and affiliated with the University of Melbourne.
Palliative Care Outcomes Collaboration (PCOC)
Clinical tools information and resources for patients, carers, families, the general public, clinicians and researchers on palliative care.
Source: Australian Government Department of Health and Ageing
Supportive and Palliative Care Indicators Tool (SPICT™)
Used to help identify people with deteriorating health due to life-shortening conditions, including frailty in older age.
Source: University of St Andrews
End of life care
End of Life Directions for Aged Care
Information, guidance and resources for health professionals and aged care workers to support palliative care and advance care planning. Includes a dedicated information page for palliative care in diverse populations, which supports palliative care coordination for Aboriginal and Torres Straight Island People, CALD and LGBTQI populations.
End-of-Life Essentials
Online learning opportunities and practice resources for doctors, nurses and allied health professionals. Designed to improve the quality and safety of end of life care in hospitals. This includes the SPIKES Tool, which provides a framework for communicating distressing information in an organised and empathetic way.
Source: Flinders University
Acknowledgements
View the list of people who contributed to this project
References
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